This is Christy. The pictures below are of her when she was in the CCU Unit. Her full name is Christy Nicole Cash.
KimmyNovember 5
christy nichole cash past away at 8 am (pst) this morning.
the hospital infections bill that would have prevented this all was vetoed by Gov. Arnold Schwarzenegger (CA) Oct 5th, 2004. Missouri, your governor did NOT veto. The rest of the states.. the bills coming your way.
FYI, clicking Schwarzenegger's name takes you to his web site. I thought the link might be useful in case anyone had anything to say to him. And the PriNews site come in handy when writing letters to the editor.
If you would like to offer prayers or words or sympathy and support, you can do so here. A tangible way to honor Christy's memory would be to visit this site and help spread the word. If you have a web site or blog of your own, a link would be a good idea.
Pictures of the quilt that was made for Christy can be seen here.
Below, in chronological order, are updates from Kimmy about her sister's condition and care...
Christy is not expected to live through the weekend, but they have said that every time she goes under...so, I believe nothing they say anymore. She' s a very strong person.
Here's whats happening now.
They believe a blood clot in her abdominal arteries formed and cut off blood supply to her digestive system instantly. Now they are saying this all happened in 24 hours and it is NOT the problem she went in with. They believe the Xigris cured whatever was initially wrong that gave her sepsis.
When asking the head surgeon Dr Mangran (sp) if this was something caused by CCU giving her blood, then not enough, then more, then fluid, then draining and moving IV's all over the place, she stated that it is very likely and couldn't comment more. One of the side effects is gastrointestinal stuff, so .. yeah.
The rotting is something called acute ischemia.So, as my Dad said from the start, they are making her worse. Take that for whatever it's worth. Each time a DR sees her they say they have never seen anything like this. Now, she has a fungus on her remaining organs and they are going to give her something but this new antibiotic will shut down her kidneys. Today she survived the latest 4 hour surgery. They found more of the ganerous or rotted stuff in her liver and took off the top piece of her liver. They are keeping her sedated through the weekend and Monday they are going back in.
So, here's the quick low down.
Went in with stomach pain and joint pain and fever, they sent her home and said nothing was wrong. Then the next day she went back in and they put her in CCY..
They couldn't find the source of infection which led to septic shock. They gave her Xigris. Then she couldnt hold food and they said her body just didnt want the food they gave her. They moved her out of CCU to a regular room where she sat in her own feces for 20 minutes before getting help. She threw up clots and couldnt absorb food still. Gastroen.... looked and said he's never seen this, called surgery. She went in, they took her stomach, part of her small intestines, part of her large intestines, her spleen, part of her oesophogus and a section of her bowel. Now they took part of her liver and theres fungus. The large intestine reconnection they did yesterday was HOLDING though, which is a good sign. Her body is still trying to hold itself
August 22
I certainly appreciate you looking out for me/christy and praying is ultimately all we have left at this point. We started that way and it seems the last option as well. So, I think it's kind of you to give updates to people that I care about (blog family) I talked to my Dad this morning and am waiting for a call back. Her heart rate is 158 and her blood pressure is a little wacky but it's better than yesterday. There is some "crackling" in her lungs, whatever that means but all in all it's steady. Today they are taking her off of the sedation and I will update you as soon as I know anything.
Christy has ARDS caused by VILI. It's called Acute Respiratory Distress Syndrome .. VILI meaning Ventilator Indused Lung Injury.
August 29
I'm sorry I haven't been in touch with you..our days are one endless thing right now..Small steps towards progress and then a complete fallback.
Christys last surgery went well and the only challenge she had until today for the most part was getting off the ventilator, waking up (which she did) and slowly recovering. The left her esophogus detached and they had a feeding tube going into her intestines.
She was taken off the ventilator last night and woke up well this time. No exorcist like babble or anything. Her platelets fell a tiny bit, but nothing like before. Her blood pressure went nuts , very very low but they got it back up. My parents have been deciding how to tell her about the surgeries. I dont know if they got that far. My dad just called and he was crying.
He said that this morning Christy has a green fluid leaking out of her and they don't know what it is. My Dad said he lifted up her arm and the bed behind her was soaked with it. They did a CAT scan and there are black spots on her bowel area and they dont know what it is or what the fluid is. The sewed Christy up on the inside from all the surgeries a few days ago but the outside remained unstictched. She now has a new fungus on the very outside edge of her open area and they are doing cultures.
My father was crying so much he couldn't speak. I've seen him cry 2 times. He said Christys Dr, Dr. Alicia Mangram (trauma surgeon, head) said that every time she walks into Christys room she has to stop and rethink everything. She's never seen this happen to anyone. She has called in additional surgeons and Dr Sheik (sp) the Infectious Disease Dr is now back on the case.
I will know in approx. 2 hours whether or not Christy has made it through.
Thank you for you continued concern.. thank everyone.
Kimmy Cash
Christy just got out of the surgery. Here's what my Dad said.. there were two tiny holes in her intestine. They don't know how or why, of course, but that's what was causing the fluid and waste leakage in her body. They had to put a colostomy for now and they are leaving her unstitched to go back in Tuesday to check everything. They took a piece of her colon ( part that ties to intestines) because she said it looks like it might start getting ischemic. They washed everything out and she's back on the ventilator, which, if she has to stay on it, they will be moving to her throat. tracheotomy
Her intestines are not attached to her esophagus , nothing is attached. That will happen after about 8 weeks or so of her body accepting everything and healing..
She still had the Gram B fungus on her liver and now the fungus on the outside and they sent medicine from another hospital over to try that out.
My parents are going in now and will call me tonight with another update.
That was the longest 5 hours ever.
September 1
Here's whats happening now.
They went in today just to wash everything out and give it a look over before they temporarily stitched her. It took a long time and the Dr came out and said she had bad news.
They found another hole, this time in her esophogus. Dr Mangram said that something is just eating her and they don't know what this is. To sew up where they cut, instead of using silk this time ( iguess as a precaution?) they used another type which is the tissue around your heart. Not sure of the name of this.
They still don't know what this new fungus is but now they have to treat it with Amphotericin B Lipid, the anti fungul that they didn't want to give her because of the harm it could do to her kidneys. Kidney failure.
So about an hour ago or so they started that I believe. She isn't in a drug induced coma again, at this point she is kind of waking up after the surgeries. My parents need some emotional support so bad, I 'm thinking about calling my grandparents or somebody and asking them to call or go over there.
There is no date to go back in at this point, they have to let her sit and deal or let the medicine deal. My dad was in there now and my moms going right back in.
September 3
I've got an update and this I actually have an answer to the WHAT THE HELL IS IT question!
Now, this isn't why she went in, or what happened with the removal of her organs (organs was a blood clot in her abdominal area--this caused the stomach rot etc)
BUT it is the fungus.
I told you they had to mess with her esophagus now too, right? Well, then they said they were going to have to give her Amphotericin B which is really rough stuff but they thought that's what they needed to do.
Ok, so the infectious disease Doc was RIGHT about his assumption. He did in fact need this medicine because she has a fungus called rhizopus. They have no idea how (could be from the sewage backup in her shower at the hosp?) but that's what it is.My sister Jenn said that yesterday Christy had tears running down her face. Now, that sounds very very sad, but in fact.. it's REALLY REALLY good. AND today my Mom and Dad said that she is totally responsive. Nodding yes and no and squeezing my Dads hand!
Ok, so now they have to give her this for a while. About 30 days. And of course it's scary and we don't know what will happen.. BUT we finally have a SOMETHING to concentrate on. Monday (i think) they will go back in and see if the fungus is clearing. It's in her blood so they need to look at all of her muscles and organs.
So, overall today and yesterday she isn't much better, understandably, BUT she isn't worse!!!!
Your thoughts are working!! Kick 'em into overdrive!
love ya
Kimmy
As for Miss Christy, here's the latest.
10 days ago she went back in to surgery. They looked around and of course the fungus is still there BUT this is a 30 day medication. So..that's that. They also put an additional "patch" on her esophogus because it looked weak. They say a weird "gunk" inside of her but sent it to the lab. It may be the fungus dying out, not sure.
So, Christy has been on the Amphotericin B for 7 days now. They call it the "shake and bake" medicine because it causes very high fevers and epileptic like seizures. BUT this isn't happening to Christy, which is good! Her kidneys seem to be holding and the surgery cut (from chest to pelvic area) is looking like it's supposed to. She hasn't had to have packed red or platelets since the day after the last surgery, so that's good. My Dad said for a "normal" person it's kinda low err high but for her, it's really really good.
Now, Christy has fallen into ICC Psychosis BUT this kind of happened before and often happens to long term ICU patients. So, she will come out of it. The plan so far is this: get her off the ventilator tomorrow (shes at 35% now though which meanns shes doing the rest on her own~ AND she was at 95% earlier. So, tomorrow, off it goes.
In 10 days they will remove the nasal tube and put it into the side of her neck. This will allow her to have ice or water and it will just flow right out of her neck (shes being fed intrevenously)
Next, after 8weeks to 3 months they will take her into a 15 hour surgery and hook her intestine to her esophagus and rebuild her colon. The timeframe just depends on how she does. She needs to start doing physical therapy of course and rehab eventually but thats far off.
For now, for the last 7 days Christy has been somewhat stable. This is the best shes done so far! The antibiotic (Amophetericn B) is a 30 day treatment so we have a ways to go BUT they said usually the hardcore buckwild side effects happen within the first 5 days and she doesn't have them!
It's a long long process but right now it looks like Christy is very close to being off of deaths doorstep. I really believe she is close to recovering~ We just have to get past this 30 day and see how that fungus is doing. In the dish they grew the fungus, the medicine killed it, so it should work!I was wrong about what they diagnosed her with the other day..i think I said ICC psychosis, but it's called ICU psychosis.. looking it up now..
Just got off the phone with my mom. Don't have too much of an update but I suppose its an update nontheless.
First, shes still on the ventilator. Was suppose to come off it but shes not ready I guess. This is truly bothersome. I've been doing alot of research on ICU delirium and being on that ventilator is in fact making it much worse. But the other option is of course unthinkable.
Second, she ( a tiny petite person normally about 95 lbs. i believe) weighs 202 pounds right now and its all fluid. Her cells arent absorbing fluid, her tissue is. That's not anything new but the the following is , so I thought I should mention it. But they *are* draining it. A very sucky side effect of that is that she now has huge stretch marks going from under her ribs i believe all the way down to her ankles. They are pretty bad. It stretched so far it broke the skin all the way down. So.. we don't want her to see that.
Also her hair is falling out. About 2/3 of her hair fell out (from the medicine?). Sheesh.
Her white cell count is kinda high, but sort of stable for her. Normal I think is about 11 (11,000?) and Christys at about 30. Which I think means that the infection is still very much in here but remember the Amp meds for the fungus take 30 days. Or rather, its a 30 days process.
She hasn't been needing platelets until yesterday. They started her back on the hydration and cumadin and then of course that lowered her platelets, so they gave her more. She hasnt needed packed red again this week though.
My parents got her markers and a dry erase board but she can't write, so they brought in a board with letters (magnetic i suppose) so she can try to talk. She says weird things. She said a nurse, the one she responds well to, slapped her. Which of course is not true. *I believe* she thinks, in her delirium, that the hospital is trying to kill her or hurt her. Its all very confusing and we just dont know. There's no way of knowing until she can try to spell it out. But then of course it changes daily so.. we'll just never know.
She puts together sentences sort of though. She said she needed her pancakes. Which of course about killed my mom because Christy doesn't know yet that she has no stomach. But she forgot how to spell I guess. So p-a-n-k was pancakes and so on.
You know what gets me. I know nothing about medicine obviously. Well, I do now after spending so many hours researching..BUT everytime I spend hours researching her symptoms and crossing it with everything else thats gone on, I actually come to some answers. I guess I'm frustrated that they don't give us the answers first. It seems as soon as the symptoms come I've got 2 guesses and one is always right! Now, I dont want to be right damn it, I want them to be. I know it's difficult though. Everyone in the damn universe is working on her case . It's just rough of course, but nothing in comparison to what she's going through herself so enough with those selfish thoughts!
Apparently the ICU psychosis or delirium is really an unknown area but there are tests and things they need to be doing everyday. Anyway, I've been sending all my latest research on delirium to my mom and shes gonna take it up with the hospital and her Drs, of course. Luckily my mothers instincts have been helping. Turns out that she's been doing alot of the things that CAN be done for delirium patients already. I guess you just might call that being a MOM. (hats off to moms!)
Ok, so to wrapup; she's gotta get off that damn ventilator. Like I mentioned above, the longer shes on the ventilator the worse it is for her psychosis. Before, in the CCU it was the opposite. They wanted to give her time to rest. Well, she's done with all that! Time to GET OFF! . Maybe a couple more days.
My mom is going to keep doing as much physical and mental therapy as possible with her without agitating her. Shes very calm and collected with her so it's bound to have an effect. They have a really good relationship. We have her favorite music and stuff around her room and my moms been making sure its bright in the daytime and dark at night, etc. (this alone can cause delirium!)
In about a week or so they will put that tube in her neck so she can drink water or chew ice. It will just flow right out of her neck but she can't lose her ability to swallow and that's what will happen.
I'll let you know as soon as I know more. It's been a rough damn day. Thank you again for letting me get all this out!
September 17
Christy is OFF the ventilator right this second! She has been on since aug 15th ..so it's almost been a full month. My mom walked in the room right after they pulled it and Christy SMILED. I'm not even kidding you!! She said Christy FULL ON SMILED!! Of course my mom was totally crying (with happiness) AHHH I'm totally freaking out happy right now!!
She has a board so she can talk to my mom and she spelled out D-E-A-N when my mom told her she talked to me (I think it's because his gift is next to her!) Isn't that just NUTS? I told Mom that she's going to have to tell everyone cause no way in hell is anyone ever going to believe it! She said "yeah, well give 'em my number!" haha She spelled Dean and then pank for pancakes..which is fine. Two machines went off yesterday and she actually heard it (was not delirious!) and spelled out D-I-E-? I know that sounds really heartbreaking but its actually awesome..She hadn't heard the machines since all of this..or no reaction to them, so..she is gaining consciousness ya know what I mean? She is aware that she's critical and aware that she hasto fight. She's kicking ICU Psychosis' ass Renee. Can you even believe her?!
Oh boy. I need to calm down here..ha.. OH and my mom said Christy got her period! It seems like no big deal things but of course for those of that know what's up.. it's a damn freakin' miracle. Of course they had to give her two things of packed red because of it but HAVING it is good.
So.. if she can maintain the proper oxygen level and keep her blood pressure kind of chill (went to 70/40 today but got it back up), then she gets to keep it off until the next surgery! Still crossing fingers of course, but damn it.. we can have a good day. A ventilator worsens the delirium so this is amazing. It's ok for us to celebrate this I think because it is a step towards being on the road to recovery!
Okay..now yesterday I talked to mom and she said the following:
Dr Mangram said Christy will be moved OUT of ICU to a Rebah Surgery Center within the hospital. She's still on the Amphotericin B but will be OUT of ICU!
Now, yesterday Christy was asking..so it was time to tell her what had happened to her. She doesn't remember ANYTHING. Weird huh? Ok. So first..all of the sudden this delirium business has hit the road. It's so freaky. Being OFF the ventilator is what did it. Apparently she was coming off of it before but without her being able to move or talk.. it was anyones guess as to how bad it may be.
My mom and the Dr sat with Christy and explained everything. She is shocked. They explained that at first she went in with the "unknown" that caused septic shock but that she got better from that and was healing when all of the sudden the clot blocked her abdomon.. Anyway, they told her everything. For 3 hours she had questions and of course cried. She asked if she was dying and the Dr said NO. She reassured Christy and had the gastro Doc in to explain to Christy that after a very long time, she will be able to eat just like everyone else. There will be small restrictions of course. Alot of conversation and alot of sadness and shock for her so I don't mean to downplay that but damn it.. the fact that she can do it ya know???
Anyway..I didn't even know you could TALK without your esophagus attached but my mom said "kimmy, her vocal cords werent severed" I dont know..same area..so I thought..whatever. Anyway.. Christys obviously in major shock and confused and depressed but this we can all help her with! I reminded my mom that we have had over 70 days or so to deal with each new thing, each emotion, each "what it" and its like DAY ONE for her...so.. I mean she remembers NOTHING about the whole visit. She didnt know how long she's been in or anything. It's so freakin' weird. ON some level its really sad but the fact that shes coherent, talking AND moving from ICU is a damn good thing!!!!
So..heres whats happening.. about 8-10 days the gastric tube goes to her neck.
In about a month or so. she goes back in for the final operation to connect everything and rebuild her colon. If all goes well with that, its recovery and rehab. Now I know our hopes have been up before but.. I dont know..something different. Her kidneys are doing perfect too!! They call the Amph the shake and bake medicine because it gives you seizures, fevers and kidney failure.BUT this has NOT happened..its like day 11 or 12 on it!
SO..that's my update. Isn't it just amazing??!!! So now, my sister wants my father and he's leaving wherever he is right now (truck driver) to get his butt back over there for her!
September 21
well..we need some prayers big time.. my father asked me to write..
christy was doing ok this weekend and then last night or yesterday her blood pressure dropped severely and she got a fever of a 101 -- her stomach was bloating and the just took her for a CAT scan.. something is bleeding inside her, they cant use a drain because its too much, so they just took her into emergency surgery right now
she went in at 1:10.. if you have an extra prayer left if you Renee, please think it now-- i dont even know how many one person gets or is supposed to get. what else can i do? i dont even know anymore
i'll let you know as soon as i knowlove
kimmy
ok..shes out of surgery, now back on ventilator and sedatives. damn it.. .s.o.b she just got off -- alright.. umm. the blood is coming out of the patches.. they dont know why. she said they cant get the upperhand on it. its just seeping out. they left her open, she goes back into surgery tomorrow morning.
wtf is going on?????? she was even doing physical therapy Renee. my dad LEFT last night because she was doing so good, he had to get back to work to pay for this friggin hosp room .. she was talking. now we start over. when does this end? i cant write, i'm sorry.. i'll update tomorrow if i hear anything new after surgery
love
kim
September 30
I can tell you now that she's bleeding internally and no one noticed but my mother and she went back into surgery (This being the 11th major surgery since being in ICU). She had perforations and gaps where the old patches were. My Dad said its sort of like sweating..her blood was just leaking from her capillaries.. sort of. It get's confusing. Anyway, they took 2 liters of blood out of her upper stomach (or where it WAS) area and left her open. They went back in yesterday and those areas and the cuts are looking pretty decent. No new leaks. They put a new seal on her surgical cut and will not be sewing her up for quite some time. She has an infection on the cut and more drains now.
She also has an infection in her throat now and the only thing I know is that my Dad said it looked like a piece of bone.. (I'm assuming he meant the infection through X-ray) We have no name for this new infection yet.. of course. Another one of "those things" (that happen to noone!)
Her teeth are bad and an oral surgeon will be coming in. Also as of today Christy cannot focus. Tomorrow they are going to see if glasses will help. This of course panics me because of the delirium. Any slight change can increase... She can answer questions and seems alert but of course says really off the wall outrageous stuff at times (mostly after they give her certain drugs) Speaking of, remember I told you that the Amphotericin B was called the shake and bake drug because of the fever and chills..and that it was so great because Christy doesn't have those affects.. well, she does now. It's for the first two hours of every dose daily.
The other news of today is that Dr Mangram told my mom that instead of Christy getting "put back together" (attaching intestines to esophagus and rebuilding colon) in 8 weeks (that was said weeks ago) it will now be 6 months to a year. We just found this out. Her hair has almost all fallen out now and she asked my mom to give her a Mohawk, so she did. She can lift on of her arms to her face now though. Umm.. ah.. the stretch marks and sores..they now are covered in water blisters but they are putting stuff on it everyday to help. Its pretty bad I guess. My sister said she looks like a holocaust victim. Great.
No packed red today so that's all the positive news I have for today. My mom is staying in her room about 12-15 hours a day and then sleeping in the hospital the rest.
October 10
From Renee in Ohio:
I have heard from Kimmy that her sister was going into surgery again today. I don't think she is likely to be able to put together an update right away--I know she never dreamed that this would go on for such a long time and still remain so uncertain.
October 13
The latest details from Kimmy about her sister:She went in today to get cleaned out again and for Dr Mangram to look around to make sure everythings doing ok. Let me rewind a bit--She got that tube put in the side of her neck last week so she can swallow water..a vacuum sucks it right out after she swallows.. ok fine. Then she was bleeding alot --like alot alot. They gave her 3 units of packed red, platelets and thats that.
SO she was doing so so for the last 2 wks.
Ok back to today.. the surgery went great and they sort of halfway stitched her up. Everything was perfect until after the surgery..before Dr M could walk out the door Christy went into a "code blue" Respiratory arrest. They administered CPR and paddles and .. yeah. SO .. that happened. The tubes being shoved down her throat over and over and the platelets and so on.. she got a clot trapped in her esophagus and .. they pulled it out fast and it was the size of half of a fist .
Well so now they put her back on the ventilator temp. She had been drinking water, having ice, talking and everything. They might pull her off the ventilator tomorrow and I guess everything ok right now. As ok as it can be.
October 17
Christy is in extremely critical unstable condition right now. when i get more than 5 minutes to sit down i'll write you and tell you whats going on
October 20
OK, Christy update: I think I said the clot was in her esophagus before but my mom corrected me, its her trachea. (cpr night) Well the following days were a big setback for her. Dr Mangram pulled out another clot in the room and she's just filled with fluids, blood etc so. Swollen again, weight back up. .Can't talk again because her throat and tongue, etc are so dry and cut up from the tubes. Also, she's been having a hard time breathing. A real hard time. Some breathing treatments sounded as if they were working and clearing her out but as of yesterday, she's back on the ventilator. This damn thing. She's been intubated I don't know how many times now (my mom would know) She's getting blood and plasma. Yep, now plasma. (I didn't know this until the other day so maybe she's been getting it for a small amount of time here)
Also, has 2 bacteria's that I just learned about. Hospital acquired just like everything else she's had, in my opinion. One is called Enterococcus. They "seem" to be resistant to an antibiotic she was on. "Seem" they say. Either they are or aren't ya know? Guess those tests take time. Anyway, its called VRE or vancomyicin resistant enterococcus. Dr. Sheik is really trying to be one step ahead here. He is very caring and trying hard .. but with the 4 fungus's at various places and now bacteria's...I think he's doing his best and know he's a good man but maybe its time for the CDC? State Health? A plastic freakin bubble?? It's great they are naming things after she gets it (always good to know what it is) and discovering new things and all but ya know, preventing this in the first place would be nice.
She's still on the Ampho= now doing it 65 days instead of 30 because her kidneys are doing good and can handle it. Her surgeon has also said she's thinking (yep, everything's still a guess) Christy's dealing with (DIC) Disseminated Intravascular Coagulation --Still researching this myself. Her hands and feet had gone blue yesterday and my mom worked on them all day and finally got them looking pink. She went around telling Nurses and apparently everyone was acting like it was no big deal and then my mom asked Dr Mangram and she said she's worried about that too. Jesus. Christy's a special circumstance and everything is unknown etc. etc., but I think the staff should take my parents concerns seriously. When is blue hands or feet ever good? Even in a newborn its immature circulation, right? I REALLY wish Dr Dean still practiced.
One of the Nurses is straight up rude to my mom. She my dad in the room this last time she was drilling in (about being 2 minutes over visiting times -Christy was crying for god sakes, that lady can shove it) When she did see my Dad she stopped her b.s. and then apologized. Why does a tall big man get taken more seriously?? Anyway, Christy has some really good Nurses too. A woman named Nicole right now is excellent, but some of the ICU nurses really need a "dealing with ICU families" class big time. They need to BACK off. My mother stays out of the way, even helps them and is helping her daughter. Christy and my mom have always had a really good close relationship and you can visually see physical signs that it helps her--. Studies show that family members help. There's always going to be something to be angry about and of course I'm pissed but IMO its really not necessary to give the family grief on top of everything they are dealing with.
So, she's gotta get the hell out of there. I mean really, she just does. This place (like every long term hospital stay I'm learning), is just giving her problem after problem. Its all one big experiment. My parents can not move her until she's more stable. They can't. Everything's a catch 22, if we do anything were screwed and if we don't do anything (sign for more procedures etc) were screwed. Anyway, that's about all I have right now. Sorry to be so negative, I'm just getting really tired of the staff giving my mom grief when my Dad isn't there. She just wants to help Christy and she is. And it's really past time for some big improvement and healing to go on.
I just wanted to also mention that the support from my friends has been amazing. I couldn't be making it emotionally (and some other ways) )right now without youEmailing is NOT a proper reply so know that you each need to be checking your physical mail soon!
The election is so close guys. Allot of us have worked our asses off for this moment (or for this moment to be over) and won't it be damn nice to take a deep breath and then dig in some more?! Christy.. a while back she was really concerned about her absentee ballot. My Mom too. Insane. (subtle reminder to anyone reading who might be flaking--deadlines are looming and over in some states) . Speaking of deadlines, I have an article to write for someone so I better get to it.
Love to all of you reading this. And thank you.
Love you
Kimmy
October 21
Christy is an experiment to this hospital. We've known it. We knew that we were never getting answers and all of our instincts from day one said that this hospital is doing her more harm than good. Why hasn't she been in isolation when they don't know what infectious disease she has? They have not prevented anything. They have only patched her when things went wrong. My mother is legally Christy's advocate and PofA and they still do not go to us. They have never handed us a paper explaining what could be wrong, what she does have, the names of her bacteria's..they have never sat down with us and said here's the plan. They have only happened to catch one of my parents in the hall way and mentioned what they "think" is going on. And yes, we keep asking and now its to the point where my parents are going to have a nervous breakdown or my Dads gonna start breakin things down in another way ya know?
The patient advocate offers my mother a prescription to ease stress (!) not a solution to the ongoing nursing problems. One Nurse has 4 patients in ICU. The charge nurse is awful and rude and never quits. She does this and apologizes outside. We don't need a bipolar charge nurse ya know? Her room is dirty. My mom cleans it everyday. They mop her room and then drag the same bucket to the other rooms just spreading everything. She took pictures and went to the V.P. again and just yesterday the cleaning staff came in with disposable cleaning supplies that were for her room only. All of this time I thought she was in one of the best hospitals for what is wrong with her and I was wrong. Methodist has lowest survival rate for sepsis patients, gastro patients and acquired infections! I found this out last night. Hospitals in Texas do not have to report the number of hospital acquired infections so we have just no idea whats around her..what other bacteria lurks... Only 4 States in this country passed the Hosp. Infections law. My own California Gov. gust vetoed this!! Why? They claim the American public simply can't understand the information and it will cost the hospitals too much money! Look at these In hospital 6 Month Mortality rates for Methodist
This is a nightmare. The hospital has nothing left to offer Christy. They don't know what's wrong or what will fix it and there's nothing left for them to do but keep experimenting. How many experiments later will it be until they ask my mom to unplug her. Until they come to us and say now her brain and heart have problems??
When she smiled in the past or moved a finger or took breaths on her own, that was our fuel as a family. We crave those things and then it makes that day better but the fact is, she is not getting better. There has been no change in her health overall..no, I take that back..she is worse. She is worse everyday. I feel as if we are sitting by torturing her. . The surgeon said she will not be going in again unless it is a dire emergency to save what life she has left. To me that means they think there is nothing more they can do. B.S!!
I spoke with my mom last night, all night and we agree that we are not doing her justice. We know we can't move her elsewhere, she will die. But we can find someone else. There has to be someone in this country with more in depth knowledge of infectious disease, fungus, hospital acquired infections, sepsis...There just HAS to be.
We need help. My parents will do whatever it takes to get someone (an expert..someone world renowned ? ) here to see Christy. We talked for 5 hours last night and it was rough but the conclusion we came to is that we can't sit here with one option left and not act. This is one way I can do something---reach out. Maybe someone will see this and help. Maybe one of you knows a better way to find these experts ? My moms family will help her if need be. Whatever amount it takes, whatever they need to do, they will do it to get someone here with more knowledge. 1-800 Doctor or whatever isn't what were looking for of course.
I've been searching the internet all night long and will continue all day. If you know a better way to search, or a way to get this help please write me. kimmy@punxfordean.org This is our last option. We have to get someone here.
Thank you
Kimmy Cash
October 24
Since I wrote last I've discovered some info and came to some conclusions that I should share because the buzz in our community proves there are far too many people that can't be left in the dark.
One, getting the "expert opinion" and/or specialist second opinion might be virtually impossible due to a couple of factors:
1) her condition - it's becoming all to clear to me that transferring her at this moment could in and of itself be fatal. At the very least it would significantly alter her mortality rate. (based on a combination of my research into ICU transfers, mortality indicators and opinion from our Dean family) I'm still discussing this with my mom and dad trying to get everyone on the same page. Balancing or trying to balance the emotional state of everyone is VERY difficult for me right now but I am making concrete steps --- Could you make that decision? Would you transfer your loved one at this point? My thought process was that the risk of leaving her there and not taking this huge leap... Well, you know what I mean.
2) The apprehension from individual Dr's around the Nation has a common link: malpractice. Seems noone wants to touch her or give opinion because of the type of conditions --hospital acquired maybe and work already performed on her by Methodist. It's very difficult getting a hospital to agree to take her or getting a specialist to come in - Now were talking about money also. See, it's their job and hospital profit that could be screwed..it's MY sisters human life ya know? Ok...let me continue before I get too pissed..
Two, I've put together a pattern . Since the day she went in the care has gone like this:
Unknown condition "A" causes "B" and "C".
"B" is worked on , treated or concentrated on, "A" is disregarded and "C" takes the backseat.
C (on the back burner) and B's side effects together create "D" and "E". Seems we forgot about "A", the underlying-
Now D and E belong to an even bigger problem and remember A?
I'm confusing myself.. Ok, bottom line? She is being treated after the fact, it's just a catch up routine and prevention does not seem to be part of the protocol, IMO. . Repair what goes wrong with no advance thought as to what can (and does everytime) happen next and deal with the underlying issues later, after they become severe. Proven over and over again... Since day one my parents have relayed the symptoms, I've researched the hell out of it, came up with 3 or 4 things that are undeniable (IM uneducated O) and sure enough all of those things become fact with time.
The question is :
**** Is this a communication problem? god complex (I know everything, I can manage so I disregard etc) or problems relaying the findings or getting someone to act on them?
or
****Is her critical care team incomplete (or incompetent)?
My opinion is that there is no prevention going on here. For whatever reason the hospital team is incomplete. Individually are they totally ALL incompetent? I would say NO based on the current surgeons actions and the Infectious Dr's guess at her fungus. Too many cooks backing in and out of the kitchen perhaps? Dr's have been backing in and out of her case since day one when I arrived. The hospital switches patients at the beginning of the month this I know for what we have been told is a teaching process. (great) When the immediate emergency is blood-related for example, the OBGYN backs out. When it's surgery, the infectious backs out. Example? When they assumed prematurely that the Sepsis was cleared they sent her to a regular floor and the Blood Doctor said he was "backing out and removing himself from the case" now. Huge mistake . Number one a Xygris patient is supposed to be monitored for 30 days after according to the drug makers site. Two, clotting (the underlying DIC!? ) is a side effect. Remember now according to her surgeon clotting is what caused the rotting of her entire stomach, spleen. preforations in intestines, coding etc etc. She should NOT have been sent to that floor and she should have been closely monitored by none other than..the blood team. DUH!. This would have saved her organs and there would not now fungus/bacteria issues. Fact? She wouldn't be where she is had it not been for the ischemia/total gastrectomy complications.
Check this out: Dad arrives last night and calls to give me an update. Says Chirsty looks surprisingly good- the only thing he noticed off hand was that her eyes were yellowish and when he went back to work last week they were bright white.
Ok, so I remember that when researching the disseminated intravascular coagulation I came across this somewhere. So I stayed up all night and after alot of digging I found that this yellowing occurs when there is excessive bilirubin (def: waste that comes from the breakdown of the hemoglobin from worn out red blood cells) in NEW blood and the liver can't keep up. Going even further brought me to a disease called hyperbilirubenemia and Hemolysis. There is ALOT to this info and it's not as simple as I'm writing but the bottom line? I give all of this info to my Dad before the 8 am Dr arrivals so he's armed..he calmly asks and immediately they order tests on a bilirubim count which had not been done for some time!!! See? The count had NOT BEEN DONE! We get these results back today. Also discovered that the TPN (tube feeding) itself causes the liver to slow down making it unable to process the collection of bilirubin. Now, without a spleen (removed during gastrectomy), the TPN (tube feeding) and no day to day watch of her bilirubin count--- well, another HUGE problem (severely life threatening) can come into play.
So my conclusion is that the DIY ethic (do-it-yourself) I (we all) cling to--- well, it HAS to apply to every single aspect in life. 15 years ago it was only about making my own clothes so I didn't have to buy them. Producing our own CD's because labels sucked. Writing our own zines etc etc. In the past 2 years D.I.Y. it turned into mass political action because our communities and people were suffering and from our campaign of course, expecting others to fix it was ignorant . Now, my god..now today, its something else entirely. Never in my life would I have thought that you couldn't even rely on trained, educated medical professionals in an emergency situation. It's true. Of course Dr's aren't a "god" and of course there are freak things that supposedly just happen. Of course you should be aware of your own body and seek knowledge etc etc. ( I thought us girls were only supposed to keep track of our periods, JESUS!) But.. for me.. I don't know. I never imagined that you couldn't count on emergency medical care in this country at least just a TEENY, TINY bit. Questioning what is going on has taken too much of our time. I'm thinking that with persistence and a clear mind I (we) can beat them to the punch and I think I (we) can get one step ahead of it. It sounds like a lofty or mighty goal I'm sure but I'm convinced you guys. We just HAVE to research it ourselves, get one step ahead of these Dr's and save her. That's it. That's all I can do at this point. That's what has to be done.
I'm still very much seeking opinion and gathering it all. I'm getting ALOT of it so it takes time to weed through but I'll do it quickly. Still, every single piece of information is welcome. Even if you think its the oddest thing or may be irrelevant..keep it coming!
Oh yeah and FINALLY, it's high time to hire a lawyer. (thanks guys) ( I suppose after that we'll have to do D.I.Y legal work too representing ourselves in the end anyway!)
(shit..one more side note (sorry): important info came from a blogger that contacted an old work partner who knew someone through an old friend (whew) Well that old friend was already aware of Christy's situation via her own daily lurking on our Dean blog--amazing.!! There are several instances of this.. Thank you Renee, thank you guys!!
October 27
Ok, yesterday fluid filled up in her right lung again. They drained a liter. Today, it's still happening so they had to put a perm. drain in. While the Dr was looking at her she noticed that her surgical incision was not healing. The tissue is seperating from the stitching. They just took her in for a CAT scan to see what they
can do without going back under. She can't go in surgery again, she just can't.My Dads calling me back when they get the CAT results. I found 3 things online that it can be..well, that could be happening but those things can't be whats happening MY sister ya know? My Dad was there over the weekend and went back to work. Now hes on his way to LA and from there to Oklahoma, then he'll go straigt back down to Dallas. I pray he doesn't have to drop his load and go sooner.
I'm having trouble with my email accounts and have not been able to retrieve email for the past 2 days. Here's a web based email if you need to reach me
diy_chicky@yahoo.com
From Renee
I won't mince words, here. I am asking God for a full fledged, honest-to-goodness miracle. Of Biblical proportions, even. I do believe miracles can happen--I don't know how often, or if one is forthcoming in this instance.Please join me. Right now I want for Christy, her parents, and sisters to be enfolded in a loving, healing mantle of prayer.
If you have a favorite prayer, of just some words of care and support to share, please post a comment here. If you cannot get commenting to work and would like me to post something for you, you can e-mail me at renee at bmgbiz.net.
October 29
I saw the lightforchristy blog and immediately told my Mom and Dad. It's so loving and moving for my family. My father has strong faith (though I fear its weakening these days) and could barely hear them all. I can't decide if it's difficult to read them because it's so sad or because it's so touching. Either way, my Dad believes this is carrying Christy and for that alone... I'm so grateful.
Here's what's happened since we last talked. I told you of the fluid, well they put a perman drain because it kept building. The fluid isn't INSIDE her lungs but outside so it's not pneumonia. The CAT scan results came back and show the cut is as fine as it can be right now, so we don't know what the Drs panic was even about. I guess Dr's are taking precautions now. Congratulations. Her white count went down so that has to be a positive sign. The regular things are happening with her skin, which is grotesque ..but manageable (according to the Drs).
The good news is that my Grandmother (Mom's mother) arrived at Methodist yesterday and will be staying with my Mom and Christy for 3 or 4 days. THANK GOD someone came. My Dad warned her about what she will see so I'm anxious to hear how it went last night and even more anxious to know if Christy responded.
I took it upon myself to file a complaint with the Joint Commission on Accredidation (JCAHO), Methodist and The Centers for Disease Control. They all had the option to check 'relative' so apparently it's legit. After doing so I read an article about this same Commission over at www.stophospitalinfections.org about them dropping the ball big time. Pennsylvania seems to be at least starting to report hospital acquired infections but the more you research... Well, Healthcare (what does Monica call it?) in this country is a complete disgusting disaster. I don't wanna make a public service announcement out of this update but did you know 100,000 people die every year from hospital infections? 2 million get them. One hundred thousand families lose someone to them. Start counting from 1 and picture someone you know.. it more than blows your mind. In some small way it truly is our fault because we weren't informed. We were ignorant to these things.
November 5
christy nichole cash past away at 8 am (pst) this morning.
i'd like to have the quilt or bandanas if its ok with the people that sent them in. i suggested that my mother receive it and she insists otherwise.My family wants to thank the blog family here for all they have done, you'll hear from them at a much later date.
I thank you for carrying my parents and helping Christy for the last 4 months. You help me everyday and for that I thank you and pay it forward always.
